Addressing challenges in diagnosis and management of rare disease through interprofessional education

Abstract

Rare diseases represent a significant public health challenge due to their complexity and lack of resources. One way to improve care for patients with rare disease is to educate healthcare professionals on the diverse and unique needs of patients with rare disorders. An interprofessional education (IPE) event was created for healthcare students based on the Interprofessional Education Collaborative’s ‘IPE Core Competencies', mainly targeting two specific competencies: (1) interprofessional communication and (2) teams and teamwork. The IPE event included direct instruction, case-based learning, and narrative medicine components using the rare disease nephropathic cystinosis as a model of a rare complex disorder. Pre- and post-event survey data were collected to assess the participants' knowledge acquisition and perceived confidence in caring for patients with a rare disease as part of an interprofessional healthcare team and included open-ended questions regarding qualities of an interprofessional team member, and key takeaways from the event. Enrollment included 163 graduate-level healthcare students from nine different disciplines. The survey data showed improved understanding of the importance of rare disease research (p < 0.001), ability to identify supportive resources for patients (p < 0.001), confidence in being part of an interprofessional team caring for a patient with rare disease (p < 0.001) and value of education about rare disease (p = 0.009). When asked to describe features of effective interprofessional teams, common traits included strong communication skills, empathy, compassion, understanding, collaboration, and respect. This work demonstrates that utilizing an interprofessional model in educating health professional students about rare diseases successfully enhanced learners’ confidence in their ability to be part of an interprofessional team caring for patients and families impacted by rare disease, and given the total prevalence of rare diseases, may have a significant impact on healthcare as a whole.